Haven't We Met, Out and About Town?

Oh yes, right here. At The Nickel.

How could I forget? I mean, it's only been, what, 11 days? On the other hand, 11 days can be an eternity.

So much has happened in those 11 days. The sun has increased its volume by 35 percent. (Don't look it up, just take my word for it. You know you can trust me.) The grass in our yard has risen to ABOVE-KNEE HEIGHT. (And we live in a town where virtually EVERYONE has fancy landscapers taking care of their emerald plots. Embarrassing.) Every morning when I take the Hellacious One out for his walk I say, "Welcome to the jungle."

All kinds of things are waxing around here, and a lot of them are good things, for once. Except for the grass, and the weeds, and the weed trees on our property (the latter of which drop all kinds of disgusting, wet vegetative matter on our cars all spring, so we're driving around looking like the Beverly Hillbillies of Eastern Massachusetts, but before they found that oil well in their yard and got stinking rich. I've got the junker car and the house with peeling paint but none of the benefits of a supply of "black gold" on the property.

Oh. Well.

Anyway, the waxing of good things. Well, there's Benjy. He's been back in the hospital for about three weeks after severe suicidal longings, a desire to stab himself -- or for me to do it for him -- greater and more intense than I had ever heard . His stay in the acute inpatient unit went pretty well, but we had no indication he wouldn't end up right back in the revolving door to the hospital. And that was getting pretty tired. For everyone.

Then our insurance did us a favor, only at the time we didn't know it and we were pretty angry. They kicked him off Unit One onto a lower level of care -- the CBAT unit. (CBAT=community-based acute treatment.) It's in a different part of the hospital. It is a different beast. Still inpatient, but not a locked ward. Very, very structured -- more so, I believe, than Unit One. Every day Benjy has group therapy sessions and school and lots of outdoor activities (he has organized a regular ultimate Frisbee game there. He has taught the other kids how to play it. He turns out to be something of a mover and a shaker, at least within the confines of CBAT. We never knew he had that in him).

He is thriving on the structure there. He is rising to the challenge of participation in all aspects of his current life: groups, school, eating the bad food without complaint and without hassling me to bring him outside food (and baby, that food is BAAAAD). He has tripled the amount of time he is able to tolerate participating in school before needing a break. (Ten minutes to thirty, if you must know.)

And here is the BEST thing of all. The BEST SUNSHINY BEAUTIFUL HEART-STOPPING GOLDEN THING OF ALL: he has friends. A community. And we have realized for the first time how isolation, how not belonging to any kind of community outside your own family, can crush a person's soul. Make depression and anxiety ten  times worse.

So, let me spell it out for you: 24/7 structure and clinical supports + a built-in community of peers who really are peers and are there for him ALL THE TIME=happy and functional Benjy.

That gives us data we can work with. Finally. And we are working with it. With a wonderful team consisting of school administrators (some pretty spectacular ones in our town, I must say), clinicians and social workers, and a very special friend, we have moved a mountain and done it so easily I have to pinch myself every so often to make sure I am awake.

Lars and I spoke with urgency, passion and love about our boy and his needs to people -- one person in particular -- who could make things happen, and things are happening, For real and true. That's all it took -- passion and love and a clear idea of what was needed. And a person on the receiving end who cares about our child and our family -- all of the children and families he serves, I am quite sure -- and who accepted without question his ethical (and very costly) mandate.

I can't say more now. I will as soon as I can. But for the first time in a really long time -- at least two years -- I have hope for my boy. That feeling of hope waxing in my breast is so wonderful I could scream (but I won't because Lars is snoring away upstairs and I wouldn't want to disturb his beauty rest).

Other waxings: somehow, in spite of my own sometimes vexing symptoms and Benjy's implosion and that leaf-meal-encrusted junker that makes small blond children turn and stare as if I am some sort of freak, and my car is an even bigger one because it is leaf-encrusted AND not a German luxury car)*** I am writing like a demon (a good kind of demon. I'm sure that kind exists). And for me, that kind of productivity looks like four pages in three days. Three good days. But it is happening, and it's coming out in good shape.

I just "sold" (for the currency of tons of exposure and a nice feather in my cap) a personal essay on stress to the Huffington Post, for their series on...stress! I'll link to it here and on my website when it comes out in a couple of weeks. That was one of those four pages in three days kind of essays.

I most likely sold (for the currency of a small handful of greenbacks) a different essay to a glossy magazine. (That one has been out there looking for a home for about a year -- and if they accept it, it may be another year before I am paid. Publishing is slooow, even if you have the good fortune to be able to work quickly.) The editor who would like to buy it is awaiting an A-Ok from the Grand Poobah of Glossy Magazine Publishing.

And then I will take Lars out to dinner with the proceeds.

I was also invited by the editor of one of the most prestigious literary journals in the country to please submit some more creative non-fiction, pronto, because he was very enthusiastic about the last one I submitted although he was not going to publish it. (Win some, lose some.) This is one of those "50 bucks and two free copies" kind of venues. At the rate I am going I'll earn a couple of dinners out a year, if I am lucky, but it's gratifying.

Oh, and I have one more little piece, also written over a long stretch of weeks, in the hands of an editor at The Paper of Record. Hoping to hear back on that one soon. Again, payment in exposure (as far as I know). And probably a long shot.

On the downside, stress is waxing larger than ever for all of us around here but I hope and believe it will subside soon.

But we are laughing, too, and having a little fun. Our Saskia has been whisked away by friends for a weekend in NH. Lars and I are thinking of fun things to do with Benjy on his home passes this long weekend, while tackling, finally, the grass jungle.

Shit happens, and less frequently (for us, anyway), lovely things happen.

So there it is.

***I do, however, have a German Luxury Husband, whom I've only seen leaf-encrusted once, when he decided to get up on the roof and clean out the gutters during a prodigious rainfall. So there, smug blond children. There.

OK, This Will Make You Smile

Even if you are not American. Also, Neeme Jarvi wins the Cutest Conductor Ever award.

Meacham's "American Patrol," Detroit Symphony

Once again, courtesy of Dad. Enjoy!

My Newest Medical Specialty*** UPDATED

Remember, Readers, how I have become practically board-certified in all those medical specialties I've been forced to deal with for so many years (neurology, psychiatry, developmental pediatrics, and rheumatology)?

Well, I am learning even more about the world of autoimmune disease. (That's rheumatology for all you uninitiated lucky folks out there who don't know.) Remember Saskia's possible lupus, and all those tests (and costs!) and symptoms and office visits? Well it turns out she's not the only one. Because all the ways in which I have been sick since November (very unpleasant ways, I might add) turn out to be likely inflammatory processes, and my blood work so far points in that direction.

Of course, I diagnosed myself weeks ago. I have a bad habit of doing that, to myself and others (do you know how many people I have diagnosed with Asperger's??? it's not even funny) -- and sometimes I am quite right.

This time I know I am. The burden is on my new rheumatologist to prove me wrong. (Some pending blood tests will tell all, I suppose.)

I think I have Sjogren's Syndrome. If I don't then maybe I have lupus with secondary Sjogren's (yes, that can happen, evidently, and you KNOW it would be just like me to get them both). I'll let you know what I find out.

What is clear is that the enormous stress of caring for Benjy all these years has not been good for my health, and has probably exacerbated my recent symptoms. That is a hard truth for a mother to hear when she loves her child so hard it hurts, but recently I have heard it.

So lots is brewing here. Benjy is doing better in the hospital than he was at home, and I am resting as best I can (while managing twenty phone calls a day and several meetings a week, not to mention visits with my boy).***** Today Lars made me promise not to drive into Boston to see Ben, because yesterday I was unbelievably tired and sick when I got home, I believe due to a longish walk in the sun with a good friend. You are not supposed to do that if you have an autoimmune disease because it makes you sick -- I know, that sucks -- but I did it to gather data. It just made me more convinced in my self-diagnosis.

Ugh.

But here is the beauty of it all: Sjogren's or lupus, or lupus plus Sjogren's, are not cancer. They are not heart disease. They are not one of those dreaded prion diseases I keep warning you not to Google.

In other words, they are not going to kill me -- not in 2013. (I believe the writer Flannery O'Connor died of lupus but that was in the 1950s so I am not going to worry about it.)

I may have even more crap to deal with going forward but I WILL be here for my children and my Lars. For Benjy, who will need me most of all, and for as long as possible. My sister was not given that chance. Cancer killed her while her kids were still so little there was no way of knowing what kind of people they would be come, or what they would accomplish. She did not ever get to know what beautiful and sweet and awesome adults the three of them became. And I would imagine, while her memory lingers in them, they do not REALLY remember her well at all. They were only ten and seven when she died.

That is more terrible than anything. So, I can deal with any rheumatological shit that comes my way. My biggest challenge henceforth (as is has been for several years now) is making sure, as best I can, that Lars and I do not suffer that most awful of losses, as my parents did seventeen years ago.

I have GOT to keep Benjy safe. We're working on it, with the best team you could ever imagine.

***** Not anymore, baby. I am done. Those phone calls wiped me out so utterly I could not do anything but sleep the rest of the day. Yesterday was a nightmare. And today once again I will not be able to drive into Boston to visit my boy -- I can barely function. I will not be able to get myself to Cambridge tomorrow for a medical appointment. I will not be able to get Saskia to her concert at the Museum of Fine Arts tonight without help. Oh, boy. Sorry for the SOB STORY readers. Just feeling...confounded.

Two Narratives of Decline Redux: Or Where's That Piece on My Own Disabilities I Promised You?

Remember when I wrote this post about Benjy's decline and my own simultaneous one? About how my Tourette's and my meds and whatever else was making me sick and hurt and exhausted and all that lovely stuff was getting in the way of life and work and writing? And I told you I'd be writing two posts for the Missouri Review blog, one about parenting Ben and the other about my own "troublesome parts"?

I tried to write the second post but exhaustion and ticciness got the better of me. Often it takes me months to write an essay or a story. Sometimes even years. Not only because of my child's issues but because of the pieces of me that often do not work.

Stay tuned, though: I am finally able (and willing) to write publicly about my own struggles, and the Missouri Review is looking forward to that second piece, whenever it emerges.

Thank You!

To all the friends -- the ones I know personally and the ones I don't -- who have reached out to me/us via email, Facebook, and this blog, thank you. I don't have the energy right now to respond individually to everyone, but please know I am deeply comforted by your gestures of kindness and empathy.

Every time I insist to myself that this world is filled with haters and miscreants, people like you prove me wrong. Thank you for that, too.

This would be such a lonely journey without you. Even with you, at times it is almost unbearable. I told Lars this morning, on a walk with the Hellacious member of this family, that I feel every day like I am playing a coerced game of Russian Roulette.

Because from one hour to the next I do not know if the gun is loaded.

I hate that metaphor, but still it seems apt. If things are stable at ten o'clock we might descend to hell at 10:50. And by 2:00 in the afternoon Benjy and I might be playing tennis, only to find ourselves drowning in anguish at 4. His is the anguish of an unquiet mind, a despair so profound and  resistant to help that it transforms him materially and psychically into a person we do not know -- a fevered, aching, anxious, seeking, sobbing, sometimes furious boy. A boy who wants more than anything on this earth to make his pain go away, however he can. Mine is the anguish of a mother forced to watch her child suffer, and know she is powerless to make him better.

If the best doctors and medical centers in Boston cannot help him, then god knows who can.

Today Lars and I felt only relief. We stayed close together and enjoyed the beautiful Boston sun. We laughed a little. We savored the quiet. Spent time with Saskia.

It's hard not to feel like a Bad Mother when you feel so good when your child has gone away. I am struggling mightily with that right now. I love him with the heat of a thousand suns but right now I need him not to be here. More to the point (as this is not about me -- not really) HE needs to not be here. He said it himself Thursday night to the crisis social worker: I am not doing well at home.

I told Benjy that day that I would never stop fighting, as long as I live, to get him the help he needs. I will not quit until he is better.

"I don't believe that I will ever get better," he said. "There is no hope."

"I know there is hope," I told him firmly. "And I am going to make it happen."

That a child not yet thirteen should have given up, on himself and on life, is horribly wrong. And so, so sad. But these days my faith in my own power to aid him, and in the powers of all of our mighty helpers,  is faltering. I hope it comes back full-strength really soon.

In the meantime we have the sun, our ornamental apple tree out front is blooming, we have some respite, and we have some time for each other, Lars and I. Time to simply BE together.

There will be no Russian Roulette here for a while.

Here We Go Again

My sweet boy is going back in the hospital, most likely tonight. I heard a thing today that no parent should ever have to hear. I heard it once before when he was ten.

Please help me end my life.

There are no words to describe the pain of that. I heard other things, too, that tell me I cannot keep him safe. Not now. Even though his evening meds have taken the edge off his despair he is not fooled, and neither am I. We know it will come back.

Lars cannot bear the thought of this. Can't we just try to make it better here? he said. I'll play tennis with him. We'll play Frisbee. We can hide the knives where he'll never think to look.

Lars forgets that someone around here has to earn money so we can eat, and that it's not going to be me. So tennis and Frisbee with Dad are not a sure thing. (And somehow I don't think that's the answer. I don't really think Lars believes it either, but desperation will do that to you.)

This will be Benjy's third hospitalization since October. The hat trick. It will be the fifth in all. And he is not yet thirteen.

Please, please, please let it be the last this year.

"There Be Mental Illness Here"

I was invited to write a blog post about writing and disability for the awesome literary Journal The Missouri Review. How wonderful!!

You can read it right here.

The Hardest Things

Some things are just going to be hard. You can't find a way to circumvent them, or fix them, or ignore them. You can't switch them for other, less hard things.

For me, one of those hard things (and let me be clear, there are a crap load of them in my life right now) is Benjy's relentless pleas for animals.

And I totally deserve it, because what goes around comes around, and I drove my parents CRAZY asking for all kinds of improbable creatures when I was his age (and younger and older).

But when I asked for a Capuchin monkey, for example, or a dolphin for the bathtub (hey, we had two of them, one could have become a dolphin habitat if my parents hadn't been so damned unreasonable), I could hear my parents when they said no. I could understand them. Sometimes they gave me a reason and sometimes they did not, but either way I dwelt in my animal-fever for a couple of weeks, dreamed of lemurs or horses or dogs that were not coming my way (OK, the horse did, briefly) and then moved on.

The lack of furred or finned or feathered people in our house (OK, I DID have a cat, a few rodents, maybe a fish or a hermit crab, but STILL) did not throw me into an emotional abyss.

Weren't my parents lucky?

I always know when Benjy is falling into the abyss because creatures of the invertebrate or quadrupedal or avian persuasion  make their appearance into our world.

Not a corporeal appearance, although that was once the case. But man do we talk about them

Our conversations go something like this:

Benjy: Mom, I'm so sad. I'm lonely. If only I could have a lizard/bird/fish I would be OK.

Me: I am not buying any more animals. You did not take care of the fish or the hermit crabs. You lost interest within a week. And I have more and more creatures to take care of. Can you imagine if I bought you a bird? You know I have a terrible wing phobia. [This happens to be true. I'm shuddering just thinking about it.]

Benjy (in a low, low voice): A lizard'/bird/fish would be my friend. I don't have any friends. Why won't you help me? Don't you love me?"

Me: My Darling, a lizard/bird/fish would not love you back. I promise."

The flush on that's boy's cheeks when he hears no, the utter defeat in his posture, his slow and weighted steps back to his bedroom, kill me. That stuff breaks my heart. And his words cut me.

I walk around most days with a thousand knife wounds to my tenderest parts. It hurts like hell.

And I do wonder. AM I heartless? WOULD he get better if I got him a bird, or a gecko? But I don't wonder too much, because I was not born yesterday.

I bought the tropical fish with high hopes he WOULD find solace in watching them swim. (That lasted about two days. And then he realized that cleaning a fish tank and  removing their little slimy corpses to the toilet when they died was kind of gross. So guess who had to do it?)

I bought the rockin' hermit crabs, overcame my fascinated dread and actually became fond of the crusty little guys. But Benjy does not notice them anymore. If it were not for me they would have died of thirst long ago.

I try to remind him that this buying of animals to fill the aching hole within him DOES NOT WORK. But he never believes me.

This time, he pleads, it will be different.

You know what? If I could buy him a couple of zebra finches and erase what's hard I would do it in a heartbeat. I'd be on my way to the pet store NOW. I would be laughing and crying and thanking all the deities I don't believe in (i.e. all of them) and drinking champagne and waltzing around the house with Lars and Benjy and giggling with Saskia.

I would really like to fix this problem in our lives. Fuck bipolar disorder with secondary psychosis or psychotic disorder with mood lability or whatever has claimed my boy. Fuck  generalized anxiety and panic and Tourette's. Fuck Asperger's. You are nasty and tenacious and inscrutable and brutish.

I hate you all. You are those hardest things that can't be fixed. That flush of despondency and posture of surrender I always see when I tell Ben he cannot have more animals -- that it would be unethical and unkind and futile anyway to yield to that pull -- hurt like I hope most of you will never know, Readers.

I mean that.

But I want to end this post on a happy note. We have some amazing supports now, even more than we did before, thanks to the Commonwealth of Massachusetts and its programs for people with mental health issues. There is going to be a lot more I can do for Ben, and I will have a lot of help doing it.

When that reality hit me today I cried.

I think what that means is that there is a smidgen of hope that the hardest things may get a little bit easier someday.

I Want One Of These...

pygmy marmoset

But one of these would be equally acceptable:

marmot

I don't know if it's the marm or what. But Mother's Day is coming up. So is Benjy's birthday, and he would totally share. Just saying. ;)

It Has To Be Said

One last thing and I will let you go about your business. (I promise it's not going to make you cry.)

Somehow I was lucky enough to snag the Coolest. Dad. Ever. He sends me the best flash mob videos on the Interwebz. He encourages me when I feel like I am going to lose my mind amidst all the crap we deal with around here by saying things like "If you are going to eat an elephant, you have to do it one bite at a time."

Damn, that's good.

And don't even get me going on my Mom. You though the hermit crabs who live here rocked? (You did, because I have told you so many times. I am terribly immodest about the invertebrate members of this family.) Well, the grandmother of my children defies description, in the Best Possible of Ways.

I kid you not. I won't go into detail here because it's one thing to brag about your invertebrates and quite another to brag about your mother (or your children, although I might occasionally succumb to that impulse).

I apologize if this post is a non-sequitur. (It is, it is.) But some things just have to be said.

You Will Love This!

Brought to you courtesy of Dad. Thanks, Dad!

[The slogan 'Our Heroes are Back' is used to announce that, after an absence of one decade, all major pieces in the Rijksmuseum's collection are back where they belong. This is what happens when they suddenly emerge in an unsuspecting shopping mall somewhere in The Netherlands. With the support of main sponsor ING, entrance to the museum is free on the 13th of April from 12:00 to 00:00.

This Flashmob recreates Rembrandt's Night Watch. It's considered one of the most famous paintings in the world.]

I have stood in front of "Night Watch" in the  Rijksmuseum in Amsterdam. It was an experience I will never forget.

And here is how they did it (if you don't speak Dutch you will have to just enjoy the visuals -- and the wonderful sounds of the language):

 

 

 

Now go and have a nice day.

 

How The Hell Am I Going To Write This Post?

This one will require bullets (of the punctuational kind, of course). Words like these hurt less when they are orderly and tight and less like a flood surge than they would like to be.**

** So much for the orderly and tight bullets.

Benjy

• Was doing so much better emotionally until last Tuesday. But his cognitive and memory losses continue, maybe worsen.
• Engaged me in a (slightly confused) conversation about the ugly Westboro Baptist Church, Louis Theroux, and freedom of speech in America and Germany, on our Monday ride to MGH. Almost like the old Benjy.
•  Tuesday he could not lift his head and face the world. Wild despair all day long. A few tepid upward swings to a place of resignation.
• Tuesday evening Lars and I took him (yet again) to MGH, where he was presented to the monthly neurology conference because he is an "interesting" (and perplexing) case. We hoped this would get him some help.
• Tuesday evening a twelve-year-old boy (thirteen in a little over a week!) became a profile in courage. He allowed himself to be made vulnerable in front of a room full of neurologists he did not know (except for one). It was excruciating for me to watch. I can only imagine how it felt to him, because his brain no longer works the way it should and he knows this. So did everyone in that room.
•  Wednesday the despair waxed large and thick and deep. All week school was an agony. And why wouldn't it be?
• Thursday morning he could not name the furniture in his bedroom. I asked him to get something off his night table, and he asked if that was the thing with his computer on it. When I said that was his desk, he wondered if the night table, then, was that thing with all the drawers. I informed him that was his dresser, and he could not invoke the process of elimination to identify his night table so I had to describe its color and what sat upon its surface. Then he knew.
• Thursday after school he told me he does not want to live the life he is living. That he does not want to live in this world at all. I have heard this many times before, but not in the past eighteen months. I am afraid to kill myself, he confessed, but I want a break from this life.
• Thursday evening he asked to go back to the hospital. I called his psychiatrist and she deferred to my judgment. I am an old pro at this now, and know when he needs it and just how to make it happen. We decided to give it another day and then make a decision.
• Thursday evening his neurologist called to discuss the findings of the conference. They are certain he does not have a degenerative brain disease. Non of those prion horrors I urged you not to Google in a recent post. Thank. You. World.
• However, here is what they think. My boy is so very mentally ill -- there is so MUCH dysfunction for his poor brain to deal with, that his brain is partially shutting down. Sort of a short-circuiting kind of thing. Because who has room for memory and word recall and other basic cognitive functions when they are swollen to bursting with anxiety and despair and mania and psychosis and all those other rogue impulses?
• I did not tell Benjy this. I told some other people. And like I do all the time now (see below), I wept.
• Friday morning the sun rose intensely. Benjy faced it. He sat in front of his SAD light and ate his waffle and got himself together (with a lot of help from me) and grabbed his tennis racket and went off to school. Small step, huge triumph
• Friday afternoon he came home from school and did not collapse. He had an invitation from a friend for Saturday. He had something to look forward to.
• Friday evening the MOST ASTONISHING THING happened. His sweet friend, L (another Aspie, but FAR less impaired than Benjy and a public school student here in town) invited Benjy to attend the middle school dance with him. Ben called me up to his room and informed me he was going.
• My heart stopped. I think you will know why.
• Um, I said, do you really think this is a good idea? There will be loud music. Flashing lights. Darkness and crowds and probably some mean kids and possibly some illicit behaviors. (And so much worse, I was convinced.)
• I texted Saskia, who was at a party. "He's going to the dance with L!!!! I can't dissuade him!!!!"
• Saskia texted back. "That will not end well. I could barely function at those things. If I come home and hang out with him will he change his mind?"
• He would not. I was beyond terrified, If you have read this blog for a while you will know why. But he wanted the chance to be regular kid for once, and I had to let him do it.
• Saskia instructed me on how he should dress. "Do NOT dress him up!" (Duh.) Make sure his pants fit. Clean shirt. Deodorant. Do we have any cologne?"
• Oh, Geez.
• "OK then, use a little of Dad's aftershave. Just a little."
• That made me laugh. When I suggested it to Ben he was afraid it might poison him if he licked his cheek. I assured him it wouldn't. I couldn't find it anyway (Lars? Where the heck do you KEEP that stuff?) and his Axe deodorant (which he NEVER wears as far as I can tell) made him smell good.
• He asked me if we could buy an Orabrush so he could brush his tongue and avoid bad breath. "90% of bad-breath germs are located on the tongue" he told me.
• Oh, Geez.
• And then, Readers, after making sure he looked fine, and picking up Saskia and her best friend so THEY could check him out and also instruct him on what to do and what not to do, Lars and I picked up his friend L and drove the two of them to the dance. He stared at the giggling, joking, CONFIDENT middle school girls infesting the front of the school and took on a decided deer-in-headlights look. Then he drew a deep breath and followed L out of the car.
• "Drive away, Lars," I said. "Quick. And don't look." I simply could not watch him walk into that school, my beautiful boy with his over-medicated gait, his glazed but lovely green eyes.
• He lasted an hour. YES!!!! And it was fine, apparently. Then he and L went back to L's house and killed zombies (virtually, folks, virtually) for another hour.
• Everyone went to bed happy. It has been a loooong time since that has happened.

Me

Your patience is wearing thin so I'll make this short.

• Sick on and off since November.
• Really REALLY sick starting last Friday. Severe musculo-skeletal pain, insomnia (up for good every night until Tuesday night by 3 a.m. because it just hurt too damn much to lie in my bed), headache, fiery (but not swollen) glands, fatigue, unsteadiness. 
• Monday I went to the doctor. "Yep," she said, "something is not right here." She ordered a battery of blood tests.
• I spent WAAAY too much time on WebMD.
• Diagnosed myself with either fibromyalgia, MS, Sjogren's disorder or some other autoimmune disease. And in my darkest moments, the cancer I have feared ever since my sister died of it in 1996.
• Tuesday I developed some scary neurological symptoms. Scary.
• Learned I do not have cancer but I do have a serious vitamin B12 deficiency. Believe it or not that can make you REALLY sick. Luckily mine was caught before my face was paralyzed. I am not joking.
• Started high-dose supplements. Slept through the night Tuesday.
• Feeling MUCH better as I write this.
• But Readers, I learned that B12 deficiency can cause depression and personality changes. i think the entire world but me had noticed I was depressed and bitchy (not my usual way of being). I realized I WAS depressed and bitchy when started crying three or four times a day, and when I thought back to my interactions with people over the past month.
• (Thank god I still have friends.)

And now, Readers, I have to work on me as well as Benjy.  I am learning how to take care of myself. It's not easy for me. The hardest thing about this life we are living is that we do not know, from one day to the next, what is going to happen. From one HOUR to the next sometimes. But I finally emerged from my hole and told my friends what's been happening over the past weeks, and my friends are coming to the rescue.

We may not have much money (understatement of the year) or luck (bigger understatement), but we super-rich in family and friends. We are the one-percent in that most important area...and I would not trade that for anything.

The only trade I would make is for my son. For his happiness and health, for the gift of not having to simply agree with him when he tells me life is not fair, for a break from the anguish of watching my child suffer (and for a break for HIM from that suffering) I would trade almost anything. My left hand (that's the important one). My eyes. My legs. Whatever.

But today is another sunny day. L is coming here to hang with Benjy today, and later we are going to my brother and sister-in-law's for a cookout. So it is shaping up to be a good one.

Yeah!

Tragedy in My Beloved Boston

Just as I was finishing the last post Benjy came downstairs to tell  me his friend's mom said there had been an explosion at the Boston Marathon. Saskia and I looked at each other and shook our heads. You know how messages get garbled in transmission. We figured someone got their wires crossed somewhere along the line.

It turned out Benjy's friend was right. Two bombs at the finish line, at least two people dead, scores more hurt. All those people, all that pain and loss, in my beautiful city. I really did not think it would happen.

The bombs went off around 3 pm, when the greatest number of runners were coming through the finish. At 3 pm, Benjy and I were supposed to be on our way to Mass General for his psychiatry appointment. Normally I drive him through the city to avoid the highway, which scares him. We would have been right near that finish line, except of course you can't drive there on Marathon Monday.

As it turns out we canceled the appointment. I couldn't get Ben's buy-in on taking the Mass Pike. If we had gone through with it, I am not sure we'd even have gotten there, as part of our journey would have been along Storrow Drive, which hugs the Charles River, and which passes fairly close by Copley Square, which is where the bombs were detonated. Even if we'd made it, Mass General would have been CHAOS, as that's where a lot of the injured have been taken.

Wow. Today is a darker day than I thought. Sure, we've got sun, but in Copley Square they had two huge plumes of smoke and dust. It rained glass. People lost lives and limbs.

Benjy and I are fine, physically, at least, and I am grateful for that. But I am sadder, in a general kind of way, than I've been in a long time.

I am sending healing thoughts to all those who suffered fear, pain, and loss today in my beautiful city. Today it was a City of Nightmares.

Little Darlin', It's Been a Long, Cold, Lonely Winter...

I think spring is finally here.

Benjy found some crocuses in our yard last week. Brave little pale-purple blossoms, poked out of the cold ground. That was one thing.

We have been waking to bird-song. That is another.

The sun is beaming today, a great big solar grin. That makes for a good day around here.

I hope the winter is behind us. That was a bad winter for this boy and his mother. A winter of hospitals and scary medical tests and scary symptoms like memory loss and loss of things he once knew. Things he learned in kindergarten.

That was a winter of other losses. Losses of friends and bodily control and dignity.

It was also a winter of gains, but not good ones. Weight gain, for example (hello, Abilify!).

But the sun is here, and so is a new medication, Lamictal, that seems to help. He has not developed a fatal rash, and he has not succumbed to despair. We've seen no mania in the past couple of weeks. Overall, he seems brighter. Like the enormous weight he has carried on his back for so many years has lightened just a bit.

He still has his obsessions. Right now it's tennis and basketball. That alone is something to celebrate: it's not video games, not guns, not paintball or bows and arrows.

The sun is coming, but it's not all better. His memory does not really work. In the space of two hours he completely forgot an encounter he had with the school nurse last week, which included a physical exam. Two hours later he simply could not recall meeting with her, in spite of the fact that they conversed about which ankle was giving him trouble and the bite marks on his lip.

He is still having urinary accidents. (We have an appointment with urology next week.)

According to his recent neuropsychological evaluation he has lost skills, lost knowledge. His functionality is not terribly good.

Right now, the primary task at hand is to determine whether the mild psychotic symptoms he's having are secondary to bipolar disorder (yes, severe depression can cause psychosis) or a primary psychiatric illness (as in, early stages of schizophrenia). We are hoping beyond hope it's the former. That would be the less shitty of the two options.

Oh, and his neurologist is still on the case. Just in case there is some rare neurological issue she's overlooked. (I guess that memory loss last week freaked her out. I know it freaked me out.) So next week she is presenting him at some sort of conference of all her neurology colleagues at MGH. I'll have to trot him out to be poked and prodded (metaphorically, at least) in front of the whole department, and then they will discuss the case (without us present, thank goodness!).

I know this will be a hard thing for him. I only agreed to it because we are desperate for answers, and this seems the best way to get some. If the doctors at Mass General can't figure this out, then who the hell can?

So there it is. I'm trying to hang onto the good stuff. He's happier than I've seen him in a long while. I think the new med is going to help, and he's getting a dose increase tomorrow.

Little Darlin', here comes the sun.

Not So Impressive Now, Are we?

He's a little less Hellacious when he's soggy. #lovemyhellacioushound

For Megan

Tasmanian Devil, a la Warner Bros.

I Googled the real thing. They look rather snarly and vicious, so this guy might be true to the spirit, if not the letter. ;)

Small Pleasures

It's been so long since I've blogged I've almost forgotten how to blog (not really). I don't know why I've been away. I guess I am feeling very FULL right now. Full of emotion, of stress, and of this shimmery, effusive love for the pieces of my life that fit. My kids. Lars. My parents, my brother and sister-in-law. My nieces and nephews. My writing. My friends.

I promised I would tell you about the results of the neuropsych. I will, but not now. Right now I am sitting with my boy on the no-longer-butterscotch-colored couch, watching Family Guy. (I know, Mother of the Year, right here. Thank god all the jokes go right over his adorable Aspergian head.) He is eating the Steakums sandwich I just made him. (Is that stuff even FOOD? It's his new thing.)

And I am just feeling happy to have him with me. Grateful for small pleasures. I don't take anything for granted anymore.

You know what else I am grateful for? You guys. The people who read this blog. Who sometimes reach out and let me know you're there. And who sometimes don't, but I can feel you there, anyway. You probably don't know what that means to me, that you have our backs. It is an indescribable feeling. It is wonderful.

Thank you. And now back to our incredibly vulgar television programming.

((hugs))

Big Day

We're meeting with the neuropsychologist today, to go over her report. I'll let you know what we hear.

I have been frozen in place, metaphorically speaking -- unable to write anything. Everything else is getting done by some automaton who looks like me, but it's getting done.

This mental illness thing is Too. Fucking. Hard. Especially because it's my kid.

But I do have good news to share: our Saskia was accepted into a very competitive summer opera program run out of the Walnut Hill School for the Arts. (I wish she would let me post her audition tapes but she would kill me. Maybe even literally.)

She'll be studying, and of course performing, opera at the school -- and for seven days in Italy! I was determined to make it happen if she got in...because it is not likely we will be able to give her the experience of travel anytime soon, if at all. I wrangled her some good financial aid, and her amazing grandparents came to the rescue -- once again. Between those sources, my money from O Magazine (whenever that piece comes out -- don't know yet), and Saskia's left-over Bat Mitzvah money, we will be able to do this.

YEAH!!!!!!

And that is all for now. The Hellacious Hound is gazing imploringly in my face. I think it's time for a walk.

Auf Wiedersehen, Readers!

Are You Feeling Brave?

Of course you are -- you stopped by my blog!

I owe you an update, so here it is:

1. All neuro/medical tests (i.e. MRI, EEG, extensive bloodwork) came back normal.

2. In theory, we celebrated. In praxis, not so much. Because we continue to teeter on the edge of the abyss -- and we continue to wait for an answer. We are dumb or naive enough to keep expecting one.

3. I researched prion diseases at the macabre (but well-intentioned) suggestion of a friend. This led to alternating periods of evil dreams and wakefulness. All. Night. Long. (If you were very, very brave, Readers, you could Google prion diseases too. The worst of the lot are Kuru and Fatal Familial Insomnia, and if you read about them you would be up all night worrying you have the latter -- and being thankful you are not a cannibal so you can't get the former. These are the stuff of nightmares.)

4. Benjy's neurologist promised me he does not have Creutzfeldt-Jakob disease (I guess, given the other members of the family, you would have to call that the "good" prion disease), and proceeded to hand us off to psychiatry. It kind of felt like coming home -- in a pathetic sort of way.

5. Benjy's mental state has become such a wide, dark sea of sorrow that I fear, every day, he will slip under and I won't be able to pull him back up. I realized the other day that a sadness like this is not sustainable over a lifetime. And once again I am afraid we will not get to keep him if we can't figure this goddamn illness out.

6. The new psychiatrist prescribed a drug called Lamictal to address the bipolar disorder, particularly the overweening depression. She said, "A lot of people do well on this drug. There's only one downside: it can give you a rash. But this is not just any rash -- this rash can kill you."

7. Shit.

8.  I Googled Stevens-Johnson Syndrome (that's what a rash is called when it's a killer rash).

9. SHIT. (Warning: Wikipedia includes photos, which you do NOT want to look at. Trust me.)

10.  I slouched around and practiced avoidance for five days. Then I called Ben's PCP, who has been doctor to both my kids since babyhood. I figured she could help me decide which crappy path to take: Should I treat the depression that could kill him with a drug that could kill him? Or should I not? She explained to me that most or all of the class of drugs used to treat mood disorders can cause a Stevens-Johnson rash, so I really don't have a choice in that regard. She also told me she has several patients on Lamictal, and that they are all doing fine. The odds are low, she said, and Ben is suffering. Do a skin check every day, and if you see a rash, bring him in.

11. I decided to start him tomorrow. I am scared, but oddly enough  I am also brave. Simultaneously.

12. In the hopes that there may be some therapeutic benefit to improving his diet, I got referrals to "feeding groups" at Mass General and Children's Hospitals. These are practices within GI/Nutrition departments that work with kids who have food aversions, food anxieties, stuff like that. It has been impossible to feed Benjy properly his whole life, because of these kinds of issues. When he was younger (well, until he started Abilify), he was quite underweight, because there was very little I could induce him to eat. Now he eats plenty, but it is all TOXIC sugar, simple carbs, processed junk food. I know you are raising your metaphorical eyebrows at me. I know it should be simple: just don't buy that stuff. Well, I've tried that. It doesn't work. and these days he is RAVENOUS all the time, because his Abilify is like my Risperdal was. It's fucking with his appetite and metabolism and hijacking his body.

13. But I saved the best for last. (No irony here, peeps. You can read on without fear.) Today I wrote, for the first time in a couple of weeks. I'm not sure how I managed it but I did. I worked on an essay about me -- not about Benjy, not about disability -- and it felt GREAT.

And now I'm returning to my old coda, the one with which I closed most of my posts in the early days of this blog:

We take things one day at a time around here. And we shall see what tomorrow brings.

Elie and I Are Gonna Change the World, Apparently

Last night I dreamed I was sitting around my dining room table with Elie Wiesel, and I asked him about the state of this crazy world of ours.

"What do YOU think?" I said.

I wish I could remember his answer. I do remember he asked me how my new meds were working out, though.

That was nice.

Two Narratives of Decline

It's been a while since I've blogged. There are a few reasons for that.

Benjy is not doing well. We have been inches away from another hospitalization. On the other hand, his EEG was normal, which is ultimately a good thing. When I first got the news it felt like I'd been kicked in the gut. I wasn't expecting that feeling, but there it was. I guess I'd hung my hopes on something that wasn't psychiatric.

I supposed I'd fooled myself into thinking that epilepsy was easy, something you just gave your kid a pill for once a day and it went away. And then in Benjy's case all the other stuff would go away too, and I'd have the boy back I once knew -- the boy I sometimes wrote about here, who may at times have wanted to die, but who was sometimes funny and bright and clever and made us all laugh.

But that was dumb. Because who ever said epilepsy was easy, or easily treated? My apologies to all the folks with seizure disorders out there, and their families, for that assumption. It was just a desperate hope. And anyway, all this stuff started long before the seizure-type symptoms reared their fearsome heads.

So yes, it is GOOD that my boy does not have yet another diagnosis to contend with. He contends with enough crap.

But we are trying to wrap our minds around what he does deal with, every day. and trying to help him get through every day. and trying to get through those days ourselves. And that takes a lot of energy. Sometimes writing, even for the blog, is the last thing I want to do.

There's been another thing eating at me recently, worrying me and taking up way too much real estate in my already over-crowded brain. (When I think of all the activity up there -- and I'm not talking about staggering works of genius here -- the image that comes to mind is Tokyo at night. And that is not what I would prefer, at fifty years old and in a state of near-constant FATIGUE.) That thing is my own disability, which has been much on my mind these days. I have mentioned it here on occasion but I don't write about it much.

This Tourette's may finally have gotten the better of me. For most of my life I did not even think of it as a disability. You were disabled, or so I thought, if you were in a wheelchair. Or blind. Or deaf. Or what we then called "mentally retarded." Now, of course, it is so much better -- and often, if not always, more accurate, to think in terms of "differently abled," and to use language like "intellectual disability."  And just as the discourse on disability has evolved since I was a kid, so has my thinking about myself and my Tourette's -- but inversely.

The thing is, while I struggled in school, socially and, while I was doped up on Haldol (AKA The Worst Med In The World) as a teen, cognitively, the disorder didn't hold me back too much. I've had two marriages, and number two is really pretty awesome. Did a PhD. Realized a long-held dream to become an author (that's just what I predicted I was going to be in my high school yearbook, btw). I did not have the academic career I had hoped for, and that was partly due to the pull of Benjy's needs and partly due to an impossible job market. At the time the plan for a tenure-track position went awry my Tourette's was not wreaking TOO MUCH havoc, although I guess I had started on my path toward unsustainable weight gain on Risperdal -- more on that later.

Well, in the past year and a half, the Tourette's has gradually gotten the upper hand over me. Because in defiance of the usual course of events, MY TS symptoms have actually become more severe with age. (This may be because the stress in my life has increased a thousandfold with Benjy's progressive illness, and stress is a well-known exacerbater of tics.) And here's the kicker: over the past thirty some-odd years I have tried virtually every medication used to treat this damned disorder (or at least every class of medication), and EVERY SINGLE ONE has had crappy, unsustainable, in some ways disabling side effects.

I am now on what I believe is my last-chance med (I WILL name you, you monster. Topirimate). I had such high hopes for it. The best thing about it, in my mind? It was going to undo the damage done by that dastardly Risperdal over the past 12 years and take off the 40 extra pounds I was dragging around.

It's working in that respect. Wanna know how? BY MAKING ME FEEL LIKE UTTER AND COMPLETE CRAP.

Actually I lost the first 18 pounds in two and a half weeks simply by trying my second-to-last chance drug and having a bad reaction to it -- I may have titrated up too fast. I could not eat or drink much for that whole period of time. (I wrote about this a while back but am too lazy to link to it -- sorry!) I've probably lost eight more pounds in the last two and a half weeks. As I said to my beloved sister-in-law recently: Who knew you could be almost dead and look so good?

So, the weight loss is great, but the GI distress, whopping headaches, and cognitive blunting are a pretty high price to pay. There's still a chance they will go away, but what if they don't?

Then I have to make a hard choice. Hard, because these tics are not easy to live with. (That is the understatement of the year.)

And no, I do not swear (unless I want to -- which, actually, is not infrequently ;). I don't have that particular kind of tic, coprolalia, which is always dramatized on TV, as if that alone is what Tourette's is. That involuntary swearing tic is actually rather rare, as far as I know.

But I do have vocal and motor tics that can be uncomfortable, both socially and physically (its TIRING when your body is constantly in motion!). Sometimes I can't type on a keyboard if my hands are very ticcy. Sometimes, when my tics are waxing, I am reluctant to go to the library. And so on. Use your imaginations.

And this, Readers, in ON MEDS. OFF MEDS, my life would be a nightmare. At this point, when every day is stress-filled, I do believe I would often not be able to drive a car safely. Every so often I decide I'm better off not driving even on the meds.

So why am I spilling my guts about all this? I bet you're wondering. Maybe you're thinking you'll go find another blog now. I hope not. You know, it took a LONG time for me to be able to talk about my Tourette's. And a longer time to use the word "disability" to describe it. But right now I am thinking a lot about all of this. About whether I really have exhausted my options for treatment. And if I have, what that means for me. Scary fucking thoughts.

All along, while I was writing and speaking one narrative of decline -- Benjy's -- there was another parallel narrative of decline I was suppressing. That one was mine.

Funny how much harder it is to talk about your own decline than someone else's -- even someone you would die for.

The difference between Benjy's decline and mine is, I am suffering SO MUCH LESS. What, after all, are my physical and social discomforts -- even my functional limitations -- compared to his acute psychic anguish? His terrible, aching loneliness? I know that, whatever life throws my way, I can handle. He's not there yet, He's only twelve. He may never get there.

I know that life is worth sticking around for, even if sometimes it truly sucks. Benjy does not know that. Not yet. My life's most important work has been helping him believe it, because it will be that much harder for me to continue believing it if he is not a part of this world anymore.

So there you go. That's why I've been AWOL. I've been in Tokyo at night. And in spite of how it looks in pictures, it's not been pretty.

What prompted this (insufferably long-winded) post is that I've been invited to write a piece for the Missouri Review blog, about how disability parenting has affected/informed my writing, and my identity as a writer. and as I've been working on that essay, I've been realizing that I'm only telling half the story if I exclude the story of myself. If I only write about being Benjy's mother and confronting his disabilities, and not the story of being me and confronting my own.

Well. that has opened up a big old can of worms. And you, Readers, are the first beneficiaries. You get to eat the worms first. Yum. ;)

Aren't you lucky?

This Is Me...

Right in front of a portrait of my great-aunt, Joan Delaunay. I took her last name for myself when I needed a new one, for the purposes of anonymous blogging. Then I took the first name of her sister, my grandmother Anna. And then, voila! The author of this blog was born.

Today is a straight-hair day. (I am LOVING this dry winter.) If you've been over to my website you've seen me on a curly-hair day. Just thank your lucky stars you have not seen me on a Brillo-pad day. I haven't had one of those since I was eighteen, but trust me, if you'd seen me on one of those you'd have run away screaming. People did.

Anyway, I'm out. This day was hard. Benjy told me he wants to be hospitalized again. He just cannot get a handle on his depression. I know this, of course. Not only that, I know he is bona fide bipolar -- not simply "manic because of his Lexapro." He is one-hundred percent bipolar, man. His rapid-cycling from deep depression to mania last weekend -- and guess who stayed up the whole night with him? NOT the parent with the Y chromosome -- followed by days of wild mood swings clinched it for me. Because now I know that on all those other nights over the past few years when he was agitated and couldn't sleep, pacing around the house, me following him so he didn't get into some kind of trouble, he was MANIC. He was depressed at the same time, usually, but guess what? I just learned that happens sometimes, and it's called a mixed state.

So I guess starting tomorrow I can add a few more hours to the YEARS of medical/psychiatric  research I have already conducted.

Wot larks!

Ok, I really am out, now. Lars went up ages ago. Even Saskia did. Benjy conked out an hour ago. It's only the Hellacious Hound and me down here. And he is fast asleep.

I Did It

I just came out on my website. I don't know why.

No, I am not gay. Neither am I named Anna. But you knew that.

www.deborahvlock.com

Deep breath. That was kind of hard.

As soon as I am up to the technological challenge I will link to the website on the sidebar of the blog, too. As I recall it's really not that hard. Even Lars could do it.

There are certain ground rules here. I will not ever use the real names of my family members on this blog or in any of my writing. You could probably dig them up pretty easily if you wanted to. Please don't.

You could also easily find me on Facebook and find out that I spend a lot of time engaging in liberal rants. Even if you'd rather see pictures of what I ate for dinner -- and really, Kraft macaroni and cheese is not all that interesting* -- I hope you'll come back to the blog. Important stuff is happening here. I mean, this is where I make fun of Lars. And what could be more important than that?

You will see links to some of my published writing on my website, and learn where you can find other stuff that you would actually have to go to a library to read (I know, what a drag). Not many links yet, but more is to come, and you'll find out about pieces that are scheduled for future publication. My book is on there too -- a link to it on Amazon and other venues, anyway -- and it is guaranteed to put anyone who is not a total English geek to sleep within twelve minutes of starting the Introduction. Maybe even the Acknowledgments. If you must read it, please just take it out of the library for goodness sake.

Okay, now that I'm out I've got to figure out if things have changed. For me, for Ben. I'll keep blogging as Anna Delaunay, I think. I kinda like her. (She's named after my paternal grandma and great-aunt, actually.) But you'll know now who I really am if you didn't already.

 I guess that's just fine.

* this may be a slight exaggeration.

Chocolate and Other Unfulfilled Desires

There is no chocolate in the vicinity of Chez Delaunay. I want chocolate. I really, really do.

But this is the least of my problems. Because I am groggy on my new meds, and the weather is bad, and Benjy is home at eleven in the morning. Today he simply could not lift his head and face the world, so I kept him home from school.

It used to be that people would be surprised when I told them he had a disability, that he was on the autism spectrum. "Really?" they would exclaim. "I would not have guessed it."

Today, anyone would guess it. Not autism, necessarily. We are not even sure that's it anymore. Certainly the Asperger's, if it even matters at this point, is secondary to a complex amalgam of psychiatric disorders.

But all it takes is a glance, a single interaction, and you know that Benjy off-kilter these days. He has declined so steeply in the past months you would not believe it. I sure don't. We hope the medical tests will help explain what the hell is going on. We are trying to be patient while we wait. Our patience is wearing thin.

Anyway, a propos of nothing, or maybe of my boredom, I did something bad today. Not something hurtful to others. Or to animals, or the environment. It wasn't unethical or illegal.

It might have been a little creepy though. And it definitely was not good for me. (On the other hand, maybe it was. Because it showed me what a horrible, horrible person I have the potential to be.)

What I did was, I cyber-stalked a woman I went to school with. I have no idea what made me think of her. I just did. She was such a nice person back then -- kind, unassuming, smart, and highly competent. I did not know her super well, but I liked her. I have not seen her face to face since the 90s, I think.

Well. You know how people who grow up in privileged families often end up making their own privileged families? Yeah. Well, this young woman was the daughter of a successful doctor father and a successful professional mother, and naturally she married a doctor. I found all of this out by Googling her. And even though she went into the same field I did, with its crap job prospects and crappier financial prospects (she DID get a job, btw, and I do know roughly what it pays -- not enough to easily get by in greater Boston) she now lives in a 1.9 MILLION DOLLAR HOUSE in one of the toniest suburbs of Boston.

I know the value of her house because I stalked her some more and found out her address, typed it into Zillow.com, and voila! there it was, in all its outrageous glory. Pictures and all.
I verily believe the  kitchen of that pile is LARGER than the entire first floor of my house.

For about twenty minutes I let her good fortune -- such as it is, and hey, how do I know her husband isn't screwing around with two nurses and a secretary? -- really make me jealous. And mad. And sad. It was mostly that damned kitchen that did it. It made me feel literally squeezed, like I couldn't breathe. I feel that way sometimes when I open a new bill from Children's or MGH and I know that whatever it is, it is  more than we have in our checking account. Or when my van starts clunking and I fear a choice between the shop and a breakdown is imminent.

I also feel that squeeze when Lars and I try to work in our kitchen together, but usually then it's not such a painful sensation. It's kind of a comical pas de deux, really. "Sorry, could I get in there?" "Oh, could you just move a bit? I need a bowl."

Because there is insufficient storage and counter space in our kitchen we've had to place a portable island right smack dab in the middle of it. We love our island but when the dishwasher door is open you can't walk through. So you have to carefully step OVER the open dishwasher door if you want to leave the kitchen and enter the dining room.

What's ironic here is that, in the small town where I grew up, I was thought to be that person from a privileged family who was going to get all the breaks. Who had everything. My father was an orthodontist, and I suppose by those small-town standards we were well-off. But my Dad was more of a dreamer and a scholar than a business man. The choices my parents modeled turned out to have more to do with pursuing emotional and intellectual satisfaction rather than financial or social status. And I think a lot of people would look at all of us now and say, "See? You did it all wrong."

But I think -- I hope -- we would all disagree.

You know, I was talking to my dear and very wise mother the other day about the lessons I've learned over the past years -- let's say over Benjy's lifetime. And the most important of them definitely has been a lesson about what is really important. (I know, I know, so cheesy. But so true.) One thing that Lars and I have made our peace with is that we will probably always live "small." Small house. Modest (or relatively inexpensive) stuff. Few if any vacations. For us, there will be no upsizing, only downsizing, and that as soon as we possibly can. We once thought we would travel. Take our kids to Europe every year. That was our dream. It meant something to us. We loved traveling, we felt there was value in it. Things to learn in seeing the world.

And there are those things! But maybe not for us. I am doing what I can to try to make a little of that happen for Saskia. We're waiting to see if she is accepted into an opera program that will take her to Italy this summer. I did what I could to get her as much financial aid as possible. Now we can only wait and see.

The only other thing I can do for her, and for Benjy, and Lars, and my parents, and the other people I love in  this world, is keep showing them how much I love them. That is the cheesy lesson I've learned. Small house, small kitchen, second-hand clothes? No problem. We've got each others' backs.

Oh, Lars

I thought it was high time someone wrote a post making fun of Lars. It's been a while. And if I don't do it, who will?

I always get the dirty jobs around here. ;)

So this one is about Lars and technology. Now let me start by saying that Lars does a HIGHLY technical job. English major notwithstanding. He is a principal software quality assurance engineer at a very cool high tech company doing very cool and complex stuff, and by god the junk he brings home to read is LESS READABLE THAN THE DEADEST OF DEAD LANGUAGES. And the deadliest, too.

He can trouble shoot almost any computer issue we have at home, even the ones that have Saskia in tears at one a.m. the night before her assignment is due. He can converse with programmers in their language. He knows what certain dorky acronyms mean. Like RTFM (delicacy prevents me from translating that into English). He's DOWN with that tech stuff.

Unless it has anything to with television remotes, microwaves, oven technology, or DVD players.

For example, when he wants to turn on the TV, he does not know which remote to use to do it. Granted, we have three of them, so this is not quite a simple operation, but still, they are each visually distinct. For example, the DVD remote, which we almost NEVER USE, is dove gray. The TV remote, with which one turns on the TV (I know, radical idea) and also accesses Netflix on the TV (OK, a bit more complicated) is all black. And the cable remote, with which one changes channels and accesses on-demand features, is black with multi-colored buttons.

But you all don't need the explanation, right?

I have painstakingly explained these processes to Lars a hundred times. Just like I have presented the use of the digital controls on our stove, again and again. ("No, the way you set the timer is by pressing the "TIMER" button. Crazy, isn't it?") And how I haverepeatedly described the way you set the clock on the microwave, which occasionally has to be done again when we lose power. ("See that "CLOCK" button? Yeah. Now push it.")

Lest you think Lars is dumb, let me assure you he is quite extremely intelligent. One of the smartest guys I know. And also one of the most helpless. But only in very focused ways. So if a mullioned pane of glass (circa 1919) in the vestibule of our house shatters, as happened last year, and I run to call a glazier, Lars will stop me and say, "I can fix that!" No matter that he has never done anything of the sort in his entire life. And he does it, and does it well, saving us probably a hundred dollars.

There are lots of other things he does that I can't -- or won't. Which is probably more to the point.

As long as Lars has me to turn on the TV for him, why should he bother?

So the other night when he said, "Now HOW exactly do I do on-demand again?" I killed him with kindness.

"I KNOW," I said. "It's really hard. It's kind of like programming. I mean, I know you are really really good at QA, but you're not a programmer. You would struggle with that. And this is kind of like programming. It's REALLY hard. But I have faith in you, Lars. I know you can do it. BECAUSE YOU CAN READ THAT DEADER THAN DEAD LANGUAGE CRAP YOU BRING TO BED EVERY NIGHT."

"That is what I read to put me to sleep," he said.

Ah.

I showed him the little on-demand button -- really, much too little, I don't know what Verizon was thinking when they designed that remote -- and he pushed it, and I guided him through the process of selecting a movie.

He did it all by himself, and it was a lot easier than programming. Actually, it was even easier than software QA. The question is: Will he be able to do it again tomorrow?

I'll let you know as soon as I know. Because I know you want to know. Who wouldn't?

So, What Am I Supposed To Do?

It was pointed out to me this morning, by someone I love more than life itself, someone who has been a crutch to me, a financial support in desperate times, a loving advisor, a shoulder to cry on, that perhaps I should focus more on the good things in my life.

And I heard her loud and clear. I mean, I have a home, and it's actually quite a pleasant one, if small. I am able to feed my family. I am richly loved and befriended. I have not died of breast or ovarian cancer, as might have been my lot had I been born even ten years earlier than I was.

Of course, on Friday my van -- which I affectionately refer to as the "scheissbox" -- broke down on the MassPike as I was driving Benjy to a much-needed psychiatry appointment at Mass General, so I may not be QUITE so lucky, all things considered. I mean, that was SCARY. And the last time our family broke down on the MassPike, in 2008, it was 2 years before Ben would ride on any highway again. Even a big road would cause acute panic. (I bet you thought only soldiers got PTSD.) So I did feel pretty sorry for both of us that day. Especially Benjy, whose fear, as usual, waxed ginormous. And he never got his psych session.

On the other hand, yesterday I got to spend two-and-a-half hours at a salon having my hair colored and being treated like someone special -- although most people probably just take things like that for granted.

So yeah, there's some stuff to be thankful for. Also, I do not live in Syria or Afghanistan or a myriad of other places it would be unfortunate for me to live in at the moment.

Wow, I felt awful. I know she did not mean to make me feel so. I know it was meant as a helpful suggestion. All this sadness is toxic, both to me and the people around me. I KNOW THIS.

So I sat on my couch and cried a little and resolved to be a better person and more thankful for what I've got and to talk less about Benjy when I talk to people.

Five minutes ago he woke up walked down the stairs, wrapped in a blanket.

"Hi, Mom," he said, and sat down beside me. I was on Facebook. He looked down at the lower right corner of my screen.

"Two-twenty-four-thirteen" he said. He said it again. And again, as he made his way toward the stairs. I knew what had happened. His laptop sometimes decides to change the date on him. We don't know why, but it screws up his gaming.

When he was halfway up the stairs I said, "Do you know what day it is?"

"Yeah," he replied. "Saturday. No, Sunday."

"Right."

But of course he lost the date. "So Mom, what's the date again?"

"Two-twenty-four-thirteen."

"But what's that? April? June? November?"

I tried to keep my voice from shaking as I answered. "February, Ben. It's February."

"OK Mom. Thanks."

My son is wearing Depends. He is not certain whether the second month of the year is April, June, or November. He barely connects with anyone anymore. He is not the person I used to know.

Why the fuck do I have to be grateful for anything right now? I guess I just have to be aware of how my grief affects others. Because I can see that it does -- and the very last thing I want to do is bring anyone else down with me.

That includes you, Dear Readers. Sorry this blog has become such a bummer! There MIGHT actually be some good news to report soon. So don't jump ship yet!

xo

What We Know Now

Nothing. Except that the MRI was normal. That is grounds for celebration, of course, but what it really means is that the diagnostic journey continues.

The neuropsych will be finished on Tuesday, and then I will BEG the psychologist to expedite her report because the neurologist really, really needs it. I will resort to bribery if necessary (as in, "If I pay extra, can you get it done in a week instead of a month? Or can you just call the neurologist TODAY and talk to her before you write the report?").

On Wednesday we drive forty-five minutes to Woburn so Benjy can be wired up for his 72-hour EEG. And maybe our answer will come out of that particular pediatric torture. I sure hope so.

But you know what's weird? Wednesday and Thursday his neurological symptoms seemed better. Actually, after he returned home from his MRI he seemed better than we'd seen him in a couple of months. (Maybe the anesthesia has unknown magical properties?) The doctor told us he'd be a sleepy couch potato for the rest of the evening. Instead he was chatty and -- for him -- quite lively.

He came down and jumped these flat-footed jumps for his grandma and grandpa. "Don't I jump HIGH?" he demanded.

"Oh, YES." said Grandma and Grandpa. (No, he does not, between you and me.)

So the neuro stuff seemed improved, but yesterday we saw the old restless seeking return, and the profound sadness. Asking asking asking for things he thinks will change his life.

When he asked for a cockatiel I grasped his arm and said, "Stop." I offered him the usual list of things he could do or things he could eat, but he merely dropped his head back on the couch in despair. He stayed like that, despondent, flaccid, glassy-eyed, for a while, until I gave up and made him take his meds, hoping he'd simply go to sleep. Sleep is sometimes our best hope.

He was up another three hours, but with his typical mood lability he recovered his (relative) good spirits after a while.

Today we have a psychiatry appointment -- back to MGH, our new second home -- and that, Readers, is a very good thing.

Brief Update, Before I Keel Over

Not from despair. Just exhaustion.

So, let me say this first, and let me enunciate very clearly:

My. Boy. Is. An. Inspiration.

I hope to be more like him when I grow up.

In spite of the fact that he had had no food since ten o'clock last night, and no water since 10 o'clock this morning, and in spite of the fact that his 12:15 MRI appointment was delayed for two hours (i.e., two more conscious hours without food or drink), I never heard one word of complaint.

No talk about hunger, except once in a matter-of-fact way. No whining about boredom. (Hey, I have been around the block a few times. I know about bringing a laptop to the hospital.)

No self-pity. No pissed-offedness. And when we met briefly with the anesthesiologist to talk about what was to come, and said anesthesiologist used the word "seizures" (I just say "staring spells" when I talk about it), I could read the utter terror on Ben's face.

"Seizures? I have SEIZURES??"

"Staring spells, honey. Staring spells."

He sat quietly after that, and bravely. If he was scared still, and I know he was, he endured his fear with such courage. My God, I can't come close to that.

And here, finally, is what you've been waiting for: There is no tumor in his brain. There is nothing that would require surgery tonight or tomorrow or even next week, as far as I know.

But there is much more data in those images than we know about at this point. And I will probably have to wait until tomorrow to hear about it from his neurologist.

There might be something in there that explains the fluctuating cognitive impairment, the incontinence, the staring spells, the occasional replacement of the boy I know with a foundling, another boy who looks like he is on drugs or intellectually disabled. And maybe it will explain why an hour after the foundling arrives he leaves again, and then Benjy does something like spend the next hour on the phone with tech support to figure out a glitch in one of his computer games.

(The tech support guy yesterday thought he was talking to someone named "Penny," which was a little unnerving for Ben -- "That could be a boy's name, right??" "Oh sure, Darlin,'" I assured him -- but together they figured the damn thing out.)

So maybe the MRI will let us know what's up, and maybe it won't. And then I'll pin my hopes on next week's EEG.

I know he's pretty normal now that we're back home, though, because he's asking for Dunkin Donuts every half hour.

For the first time ever, that is a very welcome request.

I'll post another update tomorrow when I know more. Dear Readers, sleep well. I think I might, for the first time in a few weeks. I can't wait.

Taking a Page From This Guy's Book...

And trying to sit just quietly and smell the flowers.

Oh yeah, and drink some coffee.

Update #2

He made it three whole hours. Half an evaluation, which usually runs five or six. The psychologist brought him out and said, "He's done for today. And he did just great."

We scheduled the second half for next Tuesday. I got no feedback from the psychologist -- I never had her to myself, so I couldn't ask. But she felt no need to call the neurologist, so that seemed reassuring. And she said Ben was the nicest boy she's worked with in a long time -- a real pleasure.

That comes as no surprise whatsoever. Even when he is not well, Benjy is a mensch.

I asked him on the way to his McDonald's lunch whether the testing was hard. It was.

The memory stuff is what threw him. Of course, as expected. Oh, and the numbers. Also predictable.

But here's why this child is so confounding. He could not successfully complete the memory testing today but he remembers still the three words the neurologist on call at MGH that night he was admitted asked him to hang onto. He recited them to me in the McDonald's parking lot. And they sounded darn familiar.

Only now I've forgotten them again.

I, at least, am consistently unable to remember things like strings of random words. Benjy either remembers like an elephant or forgets like *Mog the Forgetful Cat* (FAVORITE kids' book in our family! Mog is QUITE forgetful, but also an inadvertent hero.)

And that's what I don't get. Is his brain working or is it not? I don't think a simple answer is coming my way anytime soon, though.

Update

Entering hour two of neuropsych. One twenty-minute break and then he had to go back in because the psychologist came for him and because he was going in anyway to escape the high-pitched squeaking of a very little girl -- four? five? -- in the waiting room. No hand-held device could cancel out that agony. (I think it's rather a cute squeaking, but admittedly after fifteen minutes it does wear on one.)

Two hours is much better than the one I'd anticipated. He did emerge looking either like sleep was immanent or he was on some sort of mind-altering drug. Again a boy I don't know very well.

But on the other hand when he couldn't get the game he wanted on his PSP he willingly read his zombie novel on my Kindle. Whether the words made any sense to him I do not know but he did seem to be following them.

Now he is back in there. I wonder how he's doing on the tasks she sets him? He said so far it's all been pretty easy. They do start out easy and then get harder as the hours pass.

I keep hoping he's going to surprise me and exceed his performance from three years ago. Or even just match it. That would be such a joy. I am really hoping I'm just an overanxious mom who is overreacting. Except every time I've "overreacted" about my kids -- at least according to Lars -- they've ended up hospitalized or thoroughly worked over by specialists who were also concerned. And then diagnosed with crappy stuff. Almost always, my hunches have been right, and Lars has been waaay off.

So here is my hunch about Benjy: I think something is wrong with his brain. Not just because of the seizures, which in themselves indicate there is something wrong in the brain. I mean, I think there is a structural problem in there. I am praying in my Jewish-atheist way that I am wrong. I think the Universe owes us BIG TIME. I am calling in its debt.

I'm thinking the best case scenario is that the seizures are just-because, and they can be easily controlled with med. No problems inside that handsome head except some neural misfiring. I can live with that. It might mean my boy will come back to me fairly intact. It probably does mean that.

And maybe they are NOT EVEN SEIZURES I'm seeing. I mean, I know I claim to be some sort of expert but the truth is I'm a Dickens scholar. And Dickens really has no answers for me at the moment.

Hey, maybe he's JUST TIRED. Or JUST TWELVE. Or JUST GOING THROUGH PUBERTY. And I and his doctors have just jumped the gun. Maybe this is really not a big deal.

Please???

Neuropsych

Benjy's neuropsychological evaluation is happening at 9 this morning. I was just reading over the one from three years ago. At the time we were fairly distressed over the findings -- super high cognitive functioning in some areas, borderline something-or-other (intellectual disability, perhaps?) in others. These weird, weird spikes and valleys, indicative of impressive intelligence and severe learning disabilities. Oh, and the anxiety, isolation, and sadness. They were in that report, too.

He apparently talked to the psychologist about things he really cared about: Greek mythology, sketching, playing the violin.

God, that makes me want to weep.

Because I do not think the conversation will go that way today. I don't think he has access to anything he used to care about. I think he spends much of his days now in an altered mental state. I saw it yesterday at Supercuts: he sitting in that chair looking like a boy I never met, not only because of his Abilify-induced weight gain but because he looked sick, his eyes looked funny.

I texted my mom: Mom, he looks sick. His eyes don't look right. I don't know what to do.

She did not know what to do, either.

His eyelids drooped in this odd way (I have seen it once or twice before in the past couple of weeks). His eyes themselves looked almost clouded. His entire face registered a kind of loss of sensibility, although unlike during the petit mal seizure I witnessed a week ago, he did seem to maintain some kind of consciousness. I thought I saw him respond to remarks by the hair cutter but I'm not totally sure. I tried to grant him the dignity of a little distance, which at twelve he deserves. So I stood anxiously over by the seating area, but I did not take my eyes off him except to text my mom.

Interestingly, he came back to me as we were leaving Supercuts. Eyes normal, eyelids properly raised. He felt well enough to accompany me to the supermarket, and that was a temporary relief.

However. Today will be a severe test of his mental capacity, his emotional endurance, and my ability to keep myself from crying in a public space (aka the waiting room). Can you imagine what he will feel, when he cannot (as I anticipate) perform any (or many) of the tasks the psychologist sets before him? When he is forced to acknowledge that he is losing his ability to think, to do things he used to do? Oh, this is going to be a hard day!! I don't know where I am going to find the strength to endure it, or where he will, either.

I mean, what can I say to him when he sinks into despair? He is not yet so impaired that he doesn't know he's losing the ability to know certain things. He told me last night he's scared. Who the fuck wouldn't be?
I am scared too. I have never been so scared in my life, ever. Not when I got talked by a friend into skiing (worst decision of my life. SKIING??? Not my sport) and fell off the T-bar at the entry to the expert slope instead of making it up to the slope for beginners, which I'd been headed for. (You can fill in the blanks here.) Not then, and not when I went in to Beth Israel get the results of my genetic testing for the breast cancer gene, and not when I was heading in for surgery to remove my breasts so I'd have half a shot at a full life. Not even a few weeks ago when my toxic reaction to a medication made me think I might be dying.

I am scared and I can't take a Klonopin because then I can't drive Ben to the place to get his testing. I don't think a glass of wine at 7:13 a.m. would be a good idea, either. (I've considered that remedy more than once in the past years though, I will admit.)

All I can do is wake him cheerfully at 7:45, feed him a good breakfast, hold him for a few minutes, and promise him a kick-ass video game when he's done. Whether he lasts one hour or six.

Oh yeah, and McDonald's for lunch. And Swizzle's for frozen yogurt.

What I really wish I could give him is a new life. I would take his in a heartbeat if it meant he could start over. Sadly, that's not how life works. I'm trying really hard to get over that crappy reality.

My Newest Medical Specialty

So, I've spent the past week reading obsessively about epilepsy and seizures, because I am pretty sure at this point that's going to be the newest diagnosis for my poor boy. The tests of the coming two weeks should tell for sure.

At this point I have so many medical specialties under my belt they should just admit me straight into the residency of my choice, without bothering with actual med school coursework. Who needs that?

Doctors LOVE me. I speak their language, man.

Do I want to be a psychiatrist? Neurologist? (I know just how to do those goofy neuro exams, having had them myself and watched my two kids have them innumerable times.) Developmental pediatrician? Rheumatologist? Dermatology, orthopaedics and urology, although I have logged some hours there as well, I'm a little less informed about so we'll count them out.

But hey, who has time for work when you spend most of your waking hours in all of the above specialists' offices, or talking to them on the phone, or researching the symptoms they treat, or triaging your kids? Or in the damn ER?

So close to being riiiich, and yet so far. (Apologies to my doctor friends, who know I am stereotyping just a bit, right here.)

Anyway, we've seen the petit mal seizures, and so have others. The cognitive losses, the confusion and disorientation. The incontinence. I read that some children can have 100 of these "absence" seizures a day. Can you imagine that? Losing consciousness 100 times during the school day, and your teacher thinks you are not paying attention? Ah ha! Maybe That's why Benjy has not learned much in school since -- forever. And why school is a HUGE source of anxiety -- even the "Joy School" he now attends. Makes sense to me -- although on the other hand, I really think this is a relatively new development.

Last night while he slept I was fretting about him, so I decided to sneak into his room and watch him sleep. What I saw made me very sad.

His sleep is incredibly disturbed. Lots of movement. Head raised, eyes opened, head lowered, again and again. Efforts to breathe through his chronically congested nose (he refuses any kind of nose spray so he's out of luck on that one). I went and sat down on the edge of his bed. He half-woke.

"Mom? Dad?"

"It's me, honey.Can't you sleep?"

"No."

"Then come into my bed."

I have not done this in a long time. But I needed to be near him while he slept, to see what happens all night. Even if it meant I would be up\ all night. I needed the data, for his doctor and for my own information.

I told Lars he would be spending the night in Benjy's bed. He looked mournful but agreed. Good idea.

For the first hour, I kept my hand lightly on Ben's back. Again and again I felt his body twitch. Saw him raise his head and open his eyes a couple of times. After a while his body quieted and so did mine; I fell asleep. What woke me early this morning was his leg, or legs, twitching and kicking.

My poor child is not even granted the reprieve of a peaceful sleep. He is not granted a reprieve ever.

And I had the audacity to complain  a few days ago about wanting my two-months respite.

I got up pretty early this morning (I always do these days, because I am too anxious to go back to sleep after I get up at six to pee) and after trolling Facebook for a while I started Googling.

I've got my usual reputable sources. WebMD. The Mayo Clinic. Children's Hospital Boston. There are a lot of good resources out there if you know how to parse them. As an honorary medical resident, I mostly do.

And I have concluded that Benjy was seizing last night. They say the person wakes with a headache and dizziness. I will have to ask about that. He's never complained about those symptoms before, but sometimes I have to ask. And sometimes he is not a reliable reporter anyway.

I wish the next two weeks were over. Not only do I want a firm Dx so we can move forward with treatment, I want to know WHY this is happening. Idiopathic seizures have no known cause, except that they are usually hereditary. I do not know of anyone in our joint families who has epilepsy...but then again, Lars's family doesn't really talk about stuff like that (or communicate with each other well at all). So maybe they do carry that genetic predisposition.

If they don't, then what is it? A tumor? A hemorrhage? Aneurysm? Degenerative disease? Inflammatory process?

I know what you are thinking: Whoa, Anna! You are jumping the gun. And you are absolutely right. Chances are the MRI on Wednesday will reveal no structural issues. And then we will have to begin the laborious (I assume) process of figuring things out.

That's OK. I just want my dream to come true. My dream that the Benjy we used to know will come back to us. Maybe even healthier than ever. That I'll resume my education in things arcane and wonderful, courtesy of my young scholar.

That he will once again ask me to explain Marxism to him, and then ask me if we can have more talks about politics. That he will recover his strongly-held opinions about the price of gasoline. That he will know every species of bird and the names and the creatures of every pre-historic period, and which military helicopters were used in Vietnam and which in WWII, and whether the Panzer or the Sherman was a better tank and why.

Maybe he still knows some of that stuff but he has no desire to talk about it.

Boy oh boy, does that hurt..

Speaking of Boo-dog...

Really, it's my pleasure.